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there must be new info on breast angiosarcoma

survivor9yrs
Posts: 56
Joined: Oct 2009

after dealing with this cancer for the last 3 mos. and still no new info. on it. even my oncologist doesn't know. how can this be. this cancer is caused by radiation to the breast, secondary breast angiosarcoma. with all the emphasis on BC, why are drs. so slow in bringing this cancer to our attention. is there anyone, who has heard of this or maybe their oncologist knows. it is frustrating to know you survived BC and now you have this deadly cancer and no clear answers as to your prognosis or future
survivor9yrs

cancer survivor x 4's picture
cancer survivor x 4
Posts: 183
Joined: Sep 2009

Hello,
I have had radiation on both of my breasts. I can't give you any info on the cancer you are talking about, but I would like to know all the details that you know. I have never heard of this cancer you are talking about. I had radiation in 1991 and 2008. No doctor has ever mentioned this cancer you are talking about to me. Thank-You, Paula

survivor9yrs
Posts: 56
Joined: Oct 2009

Hi Paula,
I do hope you are doing well. I had radiation in 2000. in mar. i noticed a sm. lump and bruise. told it was a hematoma. in sept. i went back and had a biopsy. secondary angiosarcoma of the breast. this is a rare cancer form the radiation. it seems to be out there quite a bit, from all the forums i have read. it will look like a bruise or blood blister early on. then it just grows. it is a very agressive cancer of the blood vessels and matastasizes. i was never told 9 yrs ago either. they say radiation can cause cancer but no name has ever been put to it. there are 2 of us in a rural tri-county area. the other lady had it almost 4 yrs ago and is doing well. information is so scarce one it. most drs. don't even know what it looks like. my oncologist knows so little abt. it. he has me on gemcitabine and taxotere. 6 cycles, if i can tolerate it. i start cycle 2 tomorrow. so far so good. prognosis is hard to say. it has a high recurrence rate. usually on the incision. it is just something that will have to be watched closely. just what i wanted, more dr appts and more life with cancer. i was fortunate, it had not spread and the surgeon was able to remove it all with goodd margins. i guess, total surgical removal is the key. just be aware of it. if only i had found a site abt. angiosarcoma, instead of looking at hematomas, i would of known what it was from the pictures. remember, it is rare, but be vigilant.
survivor9yrs.

cancer survivor x 4's picture
cancer survivor x 4
Posts: 183
Joined: Sep 2009

Hello,
thank-you for answering my post. Like I said before, I have never heard of it. I even tried to google it and nothing came up, except regular sarcoma. I have an appointment with my oncologist on Thursday and we are must definetly going to have a talk about this. I have had radiation on both breasts and someone should have mentioned it to me. I do not care how rare it is. Like I need something else to worry about. Sometimes I wonder about all this medical treatment we receive. Is it hurting us more then it is helping us? Anyway, I will let you know what my oncologist has to say about it. I will be watching what is left of my breasts very carefully. Thank-You, Paula

survivor9yrs
Posts: 56
Joined: Oct 2009

Paula,
it's a good thing to talk with your dr. when i talked to my oncologist about this cancer being from the radiation. he hedged, but said it was more likely from a bump on the radiated site which in turn caused the cancer. my breast had thickened on the underside from the raddiation. they don't want to admit it is from the radiation. but all reports i have read, it is. it is a secondary breast angiosarcoma. i will be most interested on what your oncologist has to say. i have so many, should of's, in my life. if only i had had a mastectomy 9 yrs. ago. my bc was early. i didn't have chemo. my choice was wrong and now i face a very uncertain future. today was chemo day and the day i had my hair all removed. it was falling out in clumps. so not a good day. when it rains it pours....i don't even want to think what this chemo is doing to my body or what it might do to it later. but i want to tell you not to worry but i can't. i'm worried. so many women out there who have had radiation. chances are in your favor you will never have to face this. i pray.... will keep cking the post to hear from you. take care and stay well
survivor9yrs

survivor9yrs
Posts: 56
Joined: Oct 2009

paula,
saw my surgeon today. found out she has seen another case of AS. i don't know how long ago, but the person had BC in one breast. she developed a sm leison on the other breast. it turned out to be a primary AS. unreal.... i'm not so sure this is a rare cancer anymore. they have developed a new drug for mastastic AS. so that also tells me, their eyes have been opened.
stay healthy
survivor9yrs

cancer survivor x 4's picture
cancer survivor x 4
Posts: 183
Joined: Sep 2009

Hello,
it's been a long day. I had my port flushed today and talked to my oncologist. He knew what I was talking about before I could get the word out of my mouth. He said he has been an oncologist for 25 years and has treated thousands of females and a handful of males that have had radiation on their breasts and he has only ever seen 2 cases of Angiosarcoma. He said it is very rare and the chances of getting it are less then 1%. He did tell me what it looks like, so I know what to be looking for. He did agree that it is a very serious cancer to have. I will be ever watchful and I have to see my oncologist every 3 monthes for a year, so they will be keeping an eye on me. Thank-You for bringing this issue to my attention and Good Luck. Paula
P.S. What state do you live in?

survivor9yrs
Posts: 56
Joined: Oct 2009

I couldn't imagine a oncologist not knowing about it. It is very rare, but just how rare. I think they need to update some statistics. 3 seen by my surgeon in a rural area of NY. Where are you located. Did your Dr. give any more statistics on it. It is very serious. It's all in getting it out, no matastizing, and no recurrance. So here's hoping. Are you undergoing chemo. now? I started my 2nd cycle yest. Just be very vigil and don't take any little change for granted. I will keep you in my prayers.
Linda

BELIEVEx3
Posts: 24
Joined: May 2009

AS is one of the very rare secondary cancers from radiation treatment. Most MD's categorize it under the consent form as the risk of developing a secondary cancer from our treatments. Less than 500 cases have been diagnosed in the world....I was blessed with the gift of low grade AS, which meant I did not need chemo, I underwent bilateral mastectomies, I have had multiple surgeries removing any suspicious lesions, and although low grade it is so rare no one really knows..... I always wonder about everyone out there that may be at risk and that may not have this information. I have attempted to post about it previously. But as you can imagine, I do not want to upset or scare those that are undergoing their initial cancer treatment.......I am glad you are writing about it. At times this has been a lonely journey for me. At the moment I am awaiting a path report on a recent surgery........
Regarding AS follow-up, I think to be vigilant is the key, any new lesion should be biopsied right away, if suspicious for AVL a wide excision should be performed, 3 month check ups for 2 years, 6 month check ups for a minimum of 2 years and alternating evaluations from a Dermatologist Oncologist.....Your pathologist needs to be expert in AS as well........I have read all of the recent literature and would be more than happy to provide you with the latest articles driving care for AS at this time. Just let me know.
Always BELIEVE!!!

survivor9yrs
Posts: 56
Joined: Oct 2009

believex3
i am really beginning to wonder jsut how rare this cancer is anymore. i just found out there are 3 cases seen by my surgeon in a rural area. that's alot. with all the cancer forums and all the women i find with AS, i think very rare is obsolete. i had high grade but it was one tumor and localized. i don't want to upset any one either, but here are a couple of replys i have had. one lady was abt. to have surgery for bc. her drs. were trying to talk her into a lumpectomy. she just had a gut feeling not to. after reading abt. as she has decided to do the mast. another who has had radiation twice, asked her dr. about it. fefore she could get it out he knew exactly what she was referring to. told her what to look for. to me that is saving someones life, i wish i had known. i would never have guessed that what i was looking at on my breast was cancer. i know my drs. are watching. my scans were clear, no matastic lesions. that is half the battle. i would be very interested in the literature you have.
i wish the best for your lab report. what have all the past lesions been.
survivor9yrs.

BELIEVEx3
Posts: 24
Joined: May 2009

I am exhausted tonight post op day 5 from a hysterectomy ruling out another sarcoma......
I will send you info tomorrow.
I agree that I truly wonder how rare it is and if there are others out there that may have it. I initially wanted bilateral mastectomies but was told a young woman was better off with both of her breasts. UNBELIEVABLE!!! however in the end regardless I would have required radiation as a part of my protocol. I had positive lymph nodes.... My AS was so subtle no one believed it was anything to worry about and that is what concerns me most for myself and others.....I will write more tomorrow...There are subtle changes noted on mammograms that everyone should be aware of.......
BELIEVEx3

survivor9yrs
Posts: 56
Joined: Oct 2009

you just had a hysterectomy 5 days ago? i do hope you are doing well... i was told my AS was a hematoma by 2 drs. after changes and concerns abt. it draining i went back and all hell broke lose. all that time i thought i had a hematoma. i was on hemotoma sites and so many women were discribing the same thing. now i wonder if all these women were misdiagnosed too. any way just talked to my surgeon today abt. it's rarety. she maintains it is rare. but just get on some of the cancer forums.. so many women in our shoes. i just can't believe it is that rare anymore... i had just had a mamo in jan. and all ok... mar i noticed the bruise and lump... i guess the mamo gave everyone the false hope. take care and rest. i had a hysterectomy 30 yrs. ago.. never missed those body parts..survivor9yrs

cm5
Posts: 1
Joined: Dec 2009

Hi,

My sister just got rediagnosed with Angiosarcoma in her other breast. She was 25 the first time it happened, got a mastectomy and chemo done. Now, almost four years later, it came back in her other breast, although this time it is very small and so she should just need a lumpectomy. It just is so discouraging that it came back. I wish I had more info on it, as well. She never had any kind of radiation done to cause this, although she did live in an agricultural rich area, so I wonder if any pesticides or stuff had anything to do with it.

I wish I had more info to give you. Her surgery is tomorrow. I guess I just am wondering if she should have her other breast removed because of the aggressiveness of the tumor. It's so small this time, though, but I just worry if in three years, it will keep coming back.

survivor9yrs
Posts: 56
Joined: Oct 2009

CM5..........so sorry to hear about your sister. it is just plain cruel for anyone to have to go through cancer a second time. i take it your sister had primary AS. as for me, i hope to have my other breast removed as soon as i can. i'm not fooling around. i'm not taking the chance of getting this or BC in the other one. for the sake of a glob of fat, my life is worth more. how invloved was her first AS? I do wish her well. Let me know how she does.
survivor9yrs

cancer survivor x 4's picture
cancer survivor x 4
Posts: 183
Joined: Sep 2009

Good Morning,
Just wanted to see how you were doing? Paula

survivor9yrs
Posts: 56
Joined: Oct 2009

not sure who you are referring to, but i'm doing good. how about you? have 2 more cycles of chemo. can't wait to be done. tired... spend most of my time at drs. guess i had better get use to it... again... life is worth all the dr appts. and chemo and whatever they throw at me.. being a survivor again is my goal. take care
survivor9yrs

laurenstacy
Posts: 4
Joined: Apr 2010

hi,,, i am a primary as survivor almost 1 yr.... on facebook i have a group called... AngioSarcoma Cancer
there are a lot of people connecting there... if you can join...
together we stand strong..and we will prevail!

survivor9yrs
Posts: 56
Joined: Oct 2009

i have been in contact with precious... we chat via email.. i do hope you are doing well. so far so good for me. maybe someday i will join facebook again..
survivor9

Marypal
Posts: 6
Joined: May 2010

Hello,

I am very interested in joining the AS group on Facebook. Can you tell me how to get to it. I only have a fleeting knowledge of FB, but I think this is a great idea. There are so few of us compared to other cancers.

24242
Posts: 1417
Joined: Mar 2001

I am 14 year breast cancer survivor of IDC stage 3 with 11 out of 21 positive nodes as well as being HER triple negative something I just found out about my cancer all these 14 years later. I found a very small tumor on my right arm and then a month later another lump grew quickly and still growing while trying to have these diagnosed.
Yes a little scary since this is exactly how my breast cancer started, a very small lump then a fast growing tumor in lymphnodes less than six months after first lump found. I have had many of the same symptoms I had all those years ago as well but because I am not deathly ill seem to think nothing to worry about.
I have had CT scans which found the small lump and this other area no a tumor but inconclusive. MRI sees both lumps with dye the large one not seen without and inconclusive for cancer. There was mention of this being some reaction after radiation all those years ago but surgeon doesn't think it is relevant. Consulting with Radiologist now and other doctors since still do not know what it is but like last cancer chances of being cancer are slim to none.
I am having pain and they tell me tumor couldn't do it but they said that when I had a golf size tumor in lymphnodes that was killing me pressing on all sorts of nerves. What this big lump in my arm can't be pressing on nerves?? No concern even for how quickly this second lump grew even and finally surgeon mentioned possible sarcoma first time anyone has mentioned a cancer when they only wondered why I thought I had breast cancer in my arm. I don't, but if I did not make sure these lumps are not cancerous then they would wonder why I didn't come earlier when I found the things.
Has anyone else found lumps between bicept and tricept that grew quickly or did any of your lumps grow within a few weeks to the size of a plum but longer.
You know it is scary when the doctors cannot feel this large lump and this is their business and I seem to be able to find the lumps when they are the size of peas and only because they are paining me.
Been quite a ride this time
Tara

kaliki
Posts: 4
Joined: Jun 2010

First, was I ever glad to find this sight! Like most here, have had difficulty finding information on angiosarcoma. However, unlike most of you, I haven't gotten from previous breast cancer treatment. Until now, my breast exams were fine. Actually I found the football lump myself. Hence I'm considered to have primary angiosarcoma in my left breast.

Apparently, as you'all seem to know, it's hard to diagnose. MD Anderson in Texas actually sends samples to John Hopkins Hospital for a confirmation after removing the lump. Unfortunately where I am, cancer centers aren't tops in the country.

If anyone has had treatment for this in California, I'd love to hear from you. It's a scary buggard to have and I'm trying to think as positively as I can! I have surgeon appointment in about an hour I guess to see what the next step is after the positive biopsy. I'm thinking total masectomy, but I don't have anyone to help me during the recovery. A breast cancer survivor friend who had total masectomy said it was very difficult to move and get comfortable because you couldn't really use either arm.

Anyway, if anyone can or doesn't mind sharing, I'd truly appreciate it.

Thanks so very much.
Kaliki

survivor9yrs
Posts: 56
Joined: Oct 2009

kaliki,
so sorry to hear you are having to go through this horrible cancer. i had secondary AS. diag. in oct. it has now been 8 mos. and all is well, so far. i had a simple mastectomy of one breast. thinking back, i did not have any trouble with it. no pain. i was able to do all i needed to. take the most agressive approch to rid yourself of this cancer. there are alot of survivors of this. good luck.
survivor9yrs.

kaliki
Posts: 4
Joined: Jun 2010

Survivor9yrs,
It's great news to hear you have been well for 8 months. I will keep positive thoughts for you. I had a mastectomy of one breast on Wednesday night and relieved it's out of me. Like you, I'm blessed that I have little pain. It's peculiar, but basically no pain which I'm happy about. I was going to have bilateral mastectomy but as I need to take care of my brother, felt the one would suffice for now. Besides, truth be told, if it has to spread, I'd rather it go to the other breast that other places it's known to go. I'm not sure what the 'most agressive' approach is to take. I did talk with an oncologist who wanted me to wait for surgery and take combination of Avastin and Taxol if it had spread. I told him I wanted/needed the mastectomy and then I would worry about spread and treatment afterwards. What I seem to read is that any treatment is basically still in clincial trials. I'm keeping my fingers crossed it hasn't spread. It's such a odd cancer and as you said, horrible.

Thanks again for your encouragement Survivor9yrs.

PS I'm new to this concept of posting information and message boards. Any suggestions from anyone, would be great.

survivor9yrs
Posts: 56
Joined: Oct 2009

kaliki,
glad to hear you are doing good. from everything i have read, it is much better to have it removed and then chemo. the chemo. can than work solely on any mets or just safeguarding your body, instead of having to use it all to kill a tumor. my nurses couldn't believe i had no pain from my mastectomy. i'm numb. i had taxotere and gemcitabine. so far so good. have you had a ct or pet scan. mine had not spread. had a pet and ct before surgery. i do know a person who is a 4 yrs survivor of this and have chatted with others who have survived from 1-7 yrs. so maybe it can be beat. i sure am going to try.. so good luck.
survivor 9yrs

kaliki
Posts: 4
Joined: Jun 2010

Survivor9yrs,

Thanks for the positive feedback. I'm frustrated now and trying to cope with a few issues from the surgery. My surgeon shrugged them off which kind of frustrated me. Yes, I had the numbness too. Part of that is gone now and it's a bit weird to have phantom feelings and other things. Anyway, I'm interested in hearing/knowing more about your treatment or of anyone elses. I have SO many questions about treatment etc. What I read is so negative and makes me think what's the use. The fact that you have done so well, gives me a we bit of hope. I haven't had the PET/CT scan yet. I was going to do so before mastectomy, but as I care for my brother and it's just the two of us, I had to get things prepared before I had surgery. I had done a lot of cleaning etc. and they said it was bad to do strenuous exercise before taking PET as it could give misrepresentation. I didn't want any 'misrepresentation' or guesses so opted to wait until after surgery. Now I have to wait minimum of three weeks before PET in order to let mastectomy area heal and show no 'misrepresentations'. So now I'm frustrated. One outside oncologist mentioned Avasten (sp) and tamoxcin? One apparently works on the blood and not chemo and the other is chemo. Mention of radiation treatment too. But I'm thinking is that wise, since that can cause secondary angiosarcoma.
Is there a special website where you've chatted with other survivors that I can join? I'm more than happy to give you my email address if that works and you wouldn't mind.

survivor9yrs
Posts: 56
Joined: Oct 2009

kaliki
i know all to weell how frustrating this all is. when i was first diag. they were going to do the chemo first. then since my scans were clear, they decided to do the surgery first. i'm so glad they did it that way. 2 wks after surgery i started chemo. one wk. i had gemcitabine, the next wk i had gemcitabine and taxotere. then a wk off. i had 12 gemcitabines and 6 taxoteres. i had alot of side effects. especially fluid retention and shortness of breath. it was a long winter. my incision is all numb and i too have some phamtom feelings. i guess that is normal. no matter what you read, it is all worth the treatment and anything else they throw at you. it's your life, grasp it and hold on. i wonder most every day, will it come back. will today be that day. but at the same time, i'm enjoying my life and look forward to each day. all normal.. it is a nasty cancer, but there are people who have made it. most of those i have chated with are on this site. there is a facebook page for angiosarcoma, i have not been on it. cancercompass, and many more. please feel free to give me your email. it is much easier to chat through that and more private. keep on fighting and have the scans as soon as possible. chemo can also effect the scans. it did mine. as for radiation.. that's your choice. i wouldn't be in this mess if i hadn't had it. but it may be your best choice. talk with your onc. and make that decision together. it's your body..so send me your email and we will get through this. take care
survivor9yrs.

kaliki
Posts: 4
Joined: Jun 2010

Survivor9yrs, I sent you mail through this website with my email address. If you don't/didn't get it, let me know and I'll just post it here.
Thanks.

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